Community Corner: Parkinson's Support Group helps those affected cope with the inevitable changes

CHICO — On the first Wednesday of every month nearly 20 people meet at Sycamore Glen Retirement Community. They have one thing in common. They all suffer from Parkinson's disease.

Chico Parkinson's Support Group provides those with the neurological disease a place to get practical pointers for living with the symptoms, tips on how to prepare for a doctor's visit as well as information about the latest research. It's also a place to share stories.

"The group is very helpful. There's a good exchange of complaints, progress and experiences with medication," said Richard Frey, a member since he was diagnosed seven years ago. "It's good to have an exchange with people going through the same overall problems," he said.

Affects men and women

Parkinson's disease typically develops after age 50. It is one of the most common nervous system disorders of the elderly affecting both men and women. Frey was diagnosed when he was 76.

Harry Sommer, the group coordinator, was diagnosed when he was just 47.

"I was stunned when I got the diagnosis. I knew what was lying ahead because my mom had it," he said.

In some cases Parkinson's runs in families but not always. Sommer's siblings do not have the disease and no one in Frey's family has had it. Despite decades of research, scientists have only been able to determine aging as a risk factor for Parkinson's. Its causes, though, remain unknown.

"They now think that chances are it's not genetic. More and more they think it's environmental factors and genetics working together; that chemical compounds trigger Parkinson's and some people are more susceptible," said Sommer.

"Behind the eight ball"

What scientists and patients do know is that this neurodegenerative brain disorder slowly destroys the nerve cells in the substantia nigra of the brain. These cells produce dopamine, a chemical that relays messages from the brain to control movements of the human body. Without dopamine, the nerve cells in the brain cannot properly send messages and leads to the loss of muscle function.

"By the time you get a diagnosis you've lost 75 to 80 percent of your dopamine producing cells, so your brain is already behind the eight ball," Sommer said.

The National Parkinson's Foundation estimates there are one million people in the United States living with Parkinson's and another 50,000 to 60,000 new cases diagnosed each year.

Although the disease isn't fatal, people may live with it for 20 or more years. The Centers for Disease Control rated complications from Parkinson's disease as the 14th leading cause of death in the country.

"It's not a direct cause of death like Alzheimer's. In my mom's case her digestive system shut down from the Parkinson's and then her heart failed," said Sommer.

There is no cure for Parkinson's. The medicines prescribed for patients are "lifestyle medicines that treat the symptoms," said Sommer. The most common drug is generic Sinement, which goes to the nerve cells in the brain and is converted to dopamine.

"It's a designer disease. Everyone who has Parkinson's is a little bit different. You'll never find someone with the exact same symptoms as you even though we all take the same medicine. There are just so many different symptoms — tremors, stiff and sore neck, rigidity, muffled speech, loss of balance, freezing — that's when you just get stuck in one place and can't move."

Frey's first symptoms were tremors in his left arm and hand. Sometimes he wakes up and his lower legs "don't function" for a while. His neck and legs hurt almost constantly. But his worst symptom is retropulsion.

"I have trouble falling, or trying to fall, I guess I should say. It's like there's an invisible force in the air pulling me backwards all the time. There is gradual but constant change for the worse. I've lost quite a bit of ground this past year. It is scary the unknown changes that are coming. That's why the support group is good. It's full of sincere and helpful people," he said.

Scientists, doctors and those who live with Parkinson's say the biggest factor in mitigating the disease's effects is exercise.

"We talk a lot about fitness in the group. If you don't keep moving, you stiffen up. You have to keep moving the body so it stays flexible. It does a ton for your confidence, too," said Sommer.

Fitness for Parkinson's

Sommer works out five times a week at a local gym lifting weights and riding the stationary bike. He also attends Adrienne Wrightson's Fitness for Parkinson's Patients class once a week.

A life-long dancer, Wrightson developed the class based on her knowledge of movement, kinesiology and the work of others who have developed fitness for Parkinson's patients.

"I teach the class through CARD as a 'pay it forward.' My dad, who lives in Canada, has Parkinson's so I have a personal connection to helping those with the disease enhance their quality of life," she said.

There is a sense of camaraderie among Parkinson's sufferers in both Wrightson's class and the support group, a place where they can come together to cry and laugh or tell a joke or two.

"Everyone is open and honest. It's good to know you're not alone with this disease," said Sommer.